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July 5, 2019

Reed is home today for his evening with Gabriel, so I just called to get an update on Julia.  She's had a "pretty good" day today, which is a huge improvement over the last two days.  They are honest when they write their report, and bad days are recorded as such =) Earlier she was pointing at her head and seemed unhappy, so it's possible she had a headache.  (She's never had a very good way to tell us she's in pain.)  So they assumed it might be a headache and they gave her Tylenol.  About 30 minutes later she stopped pointing at her head and seemed happier, so that was probably it.   Possibly due to steroid, which was stopped today.

They tried her HME breathing sprint for the first time in several days but it only lasted 20 minutes before she became too agitated.   I guess they're going to try another form of non-vent breathing test tomorrow.  It's still fully breathing on her own, but it's a different form of humidification (which is important since the air isn't going through her mouth / not getting humidified by her saliva), and I guess it's not as loud and sometimes kids are less bothered by it.  So hopefully we'll start seeing improvement again - she was doing so well with 6-hour sprints before chemo.

So right now she's content in her room holding her Tiger and watching Peppa <3 We'll be back down tomorrow morning.  

I talked to her nurse last night about my desire to focus PT on walking again, assuming it doesn't interfere with anything more important of course.  She suggested they will try to put a schedule in place to officially get Julia out of bed and into her highchair 2-3x a day to continue to increase core strength.  She's not able to do anything like a bouncer or walker yet, but sitting upright with just the limited support of a highchair will be great.  

And it was really nice to hear that the nurses often request Julia.  They love being involved in such a positive and miraculous case =) They see so much potential with her, and they see her improve between every shift.  I guess her milestones are openly discussed, and the nurses are excited about every regained ability - such as draping her left arm over her face.  They all know it's another brand new thing.  Her grouchy days can be hard to handle for a new nurse, but she's apparently very much adored on the floor <3 

Video in comments: A clip from last night while she was playing - it shows how often we have to wipe her mouth right now... it's constant.  I assume because she just can't swallow, and now she's strong (and aware) enough to push it out rather than just let it sit there.  That one is followed by 2 short clips from last July: daddy girl and giggle bug <3 

YouTube: . .

. ******** ~~ Julia Adams ~~  ********    ********** Official Links *********** (These are here because of scammers) ********************************

Julia's *only* pages:  Website: Facebook: Julia's Fight Against Rare Cancer - Fund GoFundMe:

Julia's *only* fundraisers:  T-shirts: | Children's Book: Jewelry:

Where I buy Julia's CBD Oil (CBD BioCare 3500mg bottle): || Coupon code: danaboyd

Chordoma Foundation:

If you're new and want to know what's going on, my first post about Julia was on October 31st. You can find them all on my Facebook page or Julia's website <3

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